by Bernie Hunter

Finding the perfect present to buy anyone can be a struggle but what if you are buying for somebody who has got additional needs? In this blog, I will explain why it is so challenging to find accessible gifts.

Shopping for presents is a big task that requires a lot of thought, but if you are buying for your family member or friend who has cerebral palsy it is totally different. Children love new toys, but some toys are hard to play with if you have cerebral palsy.

Think about a simple toy such as a musical teddy bear that you press a button on the bear to make it sing. But not everyone can press a button as cerebral palsy can affect hand movements, which means that the child has to rely on other people to press it for them and that is no fun.

Buying gifts for adults with cerebral palsy can be hard too, as it needs to be a product that they can manage to use. Slippers are an example of an unsuitable gift, as they just fall off your feet every time you move. Even in your chair they slip all over the place, so I personally prefer slipper boots or cosy socks.

There are not many accessible presents available to buy in shops, so the best option is usually to do some research and see what is out there. I really would like to see shops selling an accessible range of gifts because it is very important that children and adults receive presents that they can easily use.

I would love to hear if you have bought or received any great accessible gifts. Let us know by getting in touch on Cerebral Palsy Scotland’s Facebook page.

In my last blog I talked about my own and other people’s experiences of getting AAC equipment and support. In this blog, I am going to talk about my day to day life of being a AAC user and people’s experiences of day to day life of a AAC user. 

As AAC user I feel that there isn’t enough awareness of AAC in the public eye.  And also I have a lot of people asking me about my AAC device and what I can do with my device. So from writing this blog I hope that I can make more awareness of AAC and give an insight of my and other people’s life of being an AAC user. 

As an AAC user I find most people is fine talking to me, like talking me as a normal person and give me time to speak, really understand me and just talk to me. I guess this makes me feel good because I like to know that I can talk away to people especially strangers.  But on the other hand there are people who  doesn’t talk to me  or don’t give me time to talk because I use a talker and this makes me sad. But I know this is because of lack of awareness of AAC. 

Like with everything, being an AAC user has its barriers – here are some of them:

• Like I said before that some people don’t want to talk to me or don’t give me time to talk
• My talker is a computer so sometimes it breaks down, so this is really difficult especially when I am without a voice for a number of days
• Sometimes I have something in my head that I want to say but I don’t know how to say it on my device because the word isn’t on my device, but I am quite good at describing things 

 

So being an AAC user does have a few barriers but I work around them. But being an AAC user has its benefits too, quite a lot really.  For a start my talker gives me a voice and it has opened up so many opportunities for me.  Even although my AAC device gives a voice to communicate to the world it also is my hands too for example I can’t use a computer or a phone and work the television but my talker lets me do these things. My talker is a computer, so I can access the internet through my talker and I can link my device to a computer using a cable. I use computer access pages on my device for mouse movements and other computer controls so this allows me to have a job.  

From a young age I always wanted to fight for disabled people’s rights so my talker lets me campaign about things. So even although I have cerebral palsy and find it hard to do things for myself, my talker lets me to do a bit more for myself. I would say my talker isn’t just my voice, it is really my lifeline and without it I wouldn’t be where I am today. 

So that is my day to day life experiences of an AAC user and now let us see what it is like to be an AAC user from a few different people.

 

Marion Burns

Marion uses an AAC device called Mobi2. Marion says that the Mobi has made life much better for herself not just because she can speak out, the Mobi also allows her to text which “it is great for me” Marion adds. 

Marion thinks that there is enough awareness of AAC but she adds “often feel like you are on your own with your machine” 

Marion is very comfortable speaking to people with her AAC device and says “I find everyone very good and speak to me normally – ok you have some who don’t know how to talk to you very well but just take the time. I have had a doctor who didn’t give me the time to speak.” 

But there is barriers which Marion explains, “Sometimes it can be annoying if the conversation moves on and you are still trying to get your point across. I feel that people lose interest very quickly.” 

If Marionwould give someone a guide to how to talk to a person who uses a device, she would say, “You must have patience to talk with someone with AAC equipment – they are often slow because of their disability, but they will always get their message across.”

 

Gavin Drysdale

Gavin has recently started using Grid 3 on a mini iPad. Previously, he used ovaChat8 software on a Samsung tablet. 

Gavin’s device has helped him so much. He says, “I have been using a communication device for as long as I can remember. I couldn’t imagine my life without it. Often it’s my only means of communication as very few people know Makaton sign language”

 Gavin feels that there is enough awareness of AAC but he adds, “I feel there is always more awareness that can be raised. Experience plays a big part in it. If you have met someone who uses an AAC and had a conversation with them, you are likely to be more aware than someone who hasn’t. It’s just about making people aware of AAC as much as possible. Blogs like this can really help.” 

Gavin feels that people are good at talking by giving him time to answer, but he says, “It is always nervous using my communication device for the first time with people who I haven’t had a conversation with before. You don’t know how they’ll react but most of the time it goes well. The first conversation is always the hardest.” 

If Gavin had to give a guide to someone on how to communicate with someone who uses AAC, he would say “Speak to an AAC user how you would speak to everybody else. That’s the best advice I can give.”

 

Bernie Hunter

Bernie uses a Samsung tablet with ‘Nova Chat’ programme. It is a touch screen so she use her hands to operate the device. 

Bernie’s device has made a big difference to her life – she noticed that when she took a break  from her AAC device for a while.  Her device gives her a voice and also it has helped her to take a part in the programme Still Game. 

Bernie’s thoughts are mixed on whether or not if there is enough awareness of AAC. Bernie adds, “It depends on the environment that you’re in. If it’s somewhere like Bobath then it’s fine but if you’re talking about everyday life then no, I don’t think there is enough AAC awareness. I’m saying this because I have experienced people coming up and telling me how lucky I am to have an iPad fitted on my wheelchair as I can watch videos and play games on the go. People don’t realise that the device is my way of communicating, then when I point this out to them they can’t believe it.” 

Bernie feels that people are OK talking to her, but she adds “Generally people are okay with me, yeah I do get people speaking slowly to me as they think that I can’t understand what they are saying to me. A lot of times people will speak to whoever is with me (Support Assistant) instead of talking to me directly, this really gets to me.” 

Bernie used to be shy talking to people using her device but she says is fine now. 

There are some barriers for Bernie using her device. She says, “Using my device in a more effective way, as I said in a previous blog I didn’t get any training on how to use my device so I’m very slow at using it to communicate, I find I’m using the keyboard more than the actual vocabulary programme which isn’t ideal.” 

If Bernie would give someone a guide on how to communicate with somebody who uses AAC, she would say “Don’t butt in when the AAC user is talking, don’t finish sentences for them and don’t take over if you’re supporting someone who uses AAC, they are quite capable of communicating independently – I come across these issues regularly and it’s really annoying.” 

From my own experiences and Marion, Gavin and Bernie’s experiences, it shows that AAC does make life much better and opens up many opportunities for people who require AAC. But there are barriers using AAC, like not having the right equipment and also people sometimes not knowing how to talk to an AAC user. This is down of lack of awareness of AAC. Communication is key to everything and everyone has the right to speak, so having some more awareness of AAC will make life better for everyone.  So, for the future I hope there will be more awareness of AAC.

Is there enough communication support?

In this blog, Jill Clark looks at whether people are getting enough support with their communication devices.

AAC stands for Augmentative and Alternative Communication, which really means different ways of communicating and includes communication devices, communication books and many more. One in four people with cerebral palsy living in Scotland uses AAC.

In Scotland on 19 March 2018 a law started. This law means that anyone who uses AAC should be provided with equipment. A big part of the law is also supporting people to use their equipment.

Support is very important to an AAC user because you can’t just give someone a piece of equipment and expect them to use it without any support. AAC support starts with the first assessment and carries on once someone has got a piece of equipment too. So, in this blog, I am going to highlight my experience of AAC support and also other people’s experience of AAC support too.

I have been a AAC user since I was 4 or 5, when I was at school I can honestly say I had a really good group of people supporting me with my communication devices. This group included my family, speech therapists and school teachers. What I mean by getting support is getting a device, helping me to choose the right device for me, and making sure I had all of the vocabulary which I needed at that time for my work. Also, when I was at primary school I used to go to a group at the Scottish Centre of Technology for the Communication Impaired (SCTCI), which was very supportive too in terms of getting help with my talkers and meeting other AAC users too. When I got fancier devices we got training which helped a lot. Overall I had great AAC support when I was younger and at school.

Nowadays as I am an adult I would say that I get less support then I got when I was at school, because I don’t really need it as much now. But, if I do need any help with my communication device I know where or who to contact, for example when my device breaks down, or when I need to help with something like setting my device to work with the television, or if I need a new device.

I was also recently part of Bobath’s AAC adults’ group. It was good if I needed any support and for getting together with other AAC users too. I would like to see some more groups happening to support AAC users.

After I left school it has always been a worry if it will be a fight getting a new communication device, but since leaving school I have had two new devices which I had no problem getting. I always get support when I need it and really hope that it will stay that way in the future.

I have contacted other AAC users and a parent of a child who uses AAC to get their experience of what AAC support they got and here is what I found out:

Gavin Drysdale

Gavin Drysdale is 18 and has cerebral palsy, a condition which affects his speech, balance & co-ordination. Gavin uses a communication device called NovaChat8 but currently he is looking at a new device. When Gavin is unable to use his device he uses sign language to communicate.

Gavin got his very first device at the age of four, before he started primary school. Gavin adds: “my communication device has evolved. One of the first devices I had was very like a typewriter so you could only spell out words. Now, using my communication device I can save messages and customise the layout. It’s amazing what communication devices can do nowadays”

Gavin has always had fantastic input from speech therapists and staff in school with his communication device and now he has left school that input is still there for getting a new device and the training. And also his family is very supportive of him with his AAC life too.

Gavin has no worries at the moment about his AAC support as he feels that he receives enough support.

Bernie Hunter

Bernie Hunter is 24 and has cerebral palsy which affects her mobility and speech. Bernie has been an AAC user since the age of five and currently uses a tablet that has communication software in it and this is her voice.

When Bernie was due to start primary school her family found it quite hard to get AAC equipment for Bernie. Bernie adds: “I was due to start primary school so my family had a couple of meetings and the outcome was that the school couldn’t promise that I would have the device in time for starting primary due to funding. At the time, my auntie was the named person to speak on my behalf. She got in touch with the head of education and I got the device very quickly after that”

When Bernie was still at school she got great input from the school’s speech therapist and staff for her device. She always felt that she could go to them whenever she needed support.

But since Bernie left school she hasn’t had any input from a speech therapist and she says: “In my opinion you just get given your device then that’s it, no advice or support. The company do offer you a training session but it is in England. Recently my own device has had issues and it required a repair, the technical support has been good and I got a loan of a device until I got my own back.” Also it is a worry for Bernie about who will fund any future devices.

Alec Wallace and Anna Hunter

Anna Hunter is the mother of Alec Wallace who is six. Alec has quadriplegic cerebral palsy and uses a communication device to talk. Alec mainly uses a Tobii i-12 eye gaze device to communicate.

Alec has been a AAC user since age of two, starting off by using communication symbols, and then moving to a communication book. He was introduced to an eye gaze device at age two or three and was provided with his own eye gaze device at age four.

Anna explains when Alec was younger he wasn’t given any input for his communication – just for physiotherapy and eatingdrinking. Anna added “We had limited input on communication, until we specifically asked for more input when Alec was 2. From that point, Alec started to see a Speech and Language Therapist who focussed on communication. He was quite quickly provided with a communication book. We were then referred to SCTCI. They were the first people to give Alec access to an eye gaze device. When he showed an understanding and ability with the device, they then recommended to the local education department that they should provide funding so that Alec could have his own device.”

Since Alec got his device Anna and the family feel that they have very good support from speech therapists and SCTCI.

Looking at the future, Anna added “For me, I think the big problem around AAC support is access to specialists – people who really understand the devices, how to get the most out of them, and also know how to make them work well within the school context of learning. Understandably, not all Speech and Language therapists have that specialist knowledge. We need to get to a place where users, parents and schools can gain quick, ongoing access to eye gaze or AAC specialists, and for that not to be a big fight or a big deal.”

Marion Burns

Marion Burns is age 35 and lives with cerebral palsy. Marion uses a communication device called Modi, her best device yet.

When Marion was eight she got her first device. Although the speech therapist in the school wasn’t supportive she had a great input from the SCTCI. But, due to the lack of support from her school Marion lost interest in her device.

As an adult, Marion has also had support issues with her devices. She explains, “I was waiting for a talker for a good nine months and that was really annoying for me. And when it did come I needed to wait for a key guard. During this time I had a talker which wasn’t working right meaning I was getting fed up.”

But once Marion got her device she explains that “SCTCI was great setting it up for me and the Mobi technician came to give us a quick course on how to do things, so my support workers also know how to do it.”

Marion feels that she doesn’t get enough support with her AAC equipment, adding, “Last year I needed a new key guard. I tried to get help to order it but I found no one were very willing to help and I just ended up doing it myself, which I think, “That’s terrible””.

Looking at the future Marion is worried that, when she needs a new device, that there may not be someone available to help her get a device.

From my own experiences and Gavin’s, it shows that yes, there are people who are getting good AAC support. But from Marion and Bernie’s experiences there are still people fighting for help with their communication needs and sometimes left with no AAC support. That’s not on. Communication is the key to everything so everyone should be able to communicate, but without any support you can’t, so that is why everyone who needs a piece of AAC equipment should get the right support.

Looking to the future I really hope that with this new law in place in Scotland that people who require AAC equipment will get it and the support without any problem at all. Everyone has got the right to speak.

Preparing for high school

“Rachel was very clear about the goal of her therapy – she wanted to be able to dance.”

Rachel’s mum Sharon shares their family journey, and the preparations they are making to get ready for high school.

“Rachel and her twin sister Louise were born 12 weeks early. We were told Rachel had cerebral palsy when she was eight months old. It affects how she walks, and means Rachel uses a frame or chair to get around.

When she was two her physiotherapist, a lady so amazing we call her ‘Saint Donna’, referred us to Bobath where she’s been going ever since for regular therapy.

Rachel is going to high school soon and very much looking forward to it. She wants to go to the local mainstream school with her friends, so we did a placement request. She’s a bright kid and having weighed up the options we believe it’s the best place for her. Adaptions will need to be made as it’s a bigger school and there will be a lot more moving around. But she’s becoming very confident and independent and now wants to go off to shops in the shopping centre on her power scooter without us.

She has support workers at primary and uses a laptop and ipad. But her Occupational Therapist is looking at what she might need at high school as there will be more background noise and that might not work if she is speaking into a computer.

Rachel’s goal was to be able to stand up and dance. Therapy helped her work on her balance and standing against the wall to support herself. She’s a lot more flexible than I would have known.”

Kirsty is 34. As a busy hospital doctor, she’s on her feet constantly and describes what went through her mind before having foot surgery.

“I was born 10 weeks premature and I have Spastic Diaplegia. I would say it’s quite mild. It’s walking that affects me, balance, co-ordination, that sort of thing. My arms were affected when I was growing up, but my arms are fine now.

I was in the Scottish Disabled swimming squad as a teenager. It was really good for me, it was good for my fitness, my confidence and good to meet other people with a disability. When I was thinking about doing Medicine my Guidance teacher told me to recognise my limitations, but I met a girl through swimming with Spina Bifida who walked on crutches and was doing Medicine. It made me think I’ll have a go.

In medicine, you get to work overseas if you want. I did a placement in South Africa and America. That was a thing lots of people thought was a silly idea and it was fine. I did it and enjoyed it and I was fine.

Foot surgery

I walked on my tiptoes until I was 21. My joints were subluxing and I was struggling. I had foot surgery on my right foot and I had my foot realigned and my Achilles Tendon released. At the time, there wasn’t a case study on it. I felt it was worth a go because my feet were the very things that were going to take me off my feet.

When I was 29 I got my left foot fixed. The trouble was it wasn’t a standard operation. It wasn’t a case of, if this goes wrong we’ll do this. It worked out fine for me and my feet are now in a much better position. I now walk heel to toe, there’s less pressure.

First time around when I was younger I underestimated the recovery time. I was in a wheelchair for six weeks, got back on my crutches and walked slowly with a moon boot and 11 weeks after surgery I was off to South Africa and did physio myself.

After the surgery when I was 29 the surgeon told me I had to take three months off work. I think because I was a lot older it took me a lot longer to recovery.

I’m a care of the elderly doctor so I see people coming in their 70s, 80s and 90s falling over so I do worry about what it will be like when I’m older. I’m on my feet with my job and I walk a lot and stay really active so I think that’s probably helped my strength.

Everyone’s different and within reason, I think everyone has to try and keep active. I’ve been a bit lazy and I think like most people in my 20s I wasn’t doing as much exercise so now I’m working towards an open water swim and I try to do other stuff for balance.

I was lucky in my 20s as my job was active I was running around a hospital and I could be on my feet for 12 hours a day. So then when I wasn’t doing that as much I felt that I probably needed to up my own exercise and since doing that I feel a bit stronger and my balance is better.

I fall over, I don’t not do something. If I’m at a wedding and I do a ceilidh dance and I get knocked over my friends just think Kirsty’s fallen over again. I kind of just do stuff. I’m not unsafe, but I have fun. Sometimes you do things and think I can’t do this, but most of the time things can be adapted and people can be very supportive. I’ve got an amazing group of friends.

My mum would say sometimes it’s easier and sometimes it’s harder being only mildly affected by cerebral palsy. I’m trying to keep up with all my peers and sometimes that’s harder because none of them have anything wrong with them.

Deciding whether or not to have surgery

I didn’t think about it too much. I thought my feet are really sore I can’t walk on them as well now. I felt that I had to go for it.

My advice to anyone weighing up the decision to have surgery would be:

• • Get as much information as you can in a way you understand it.
  • Ask what could go wrong in the worst case scenario.
  • Find out what is the likelihood of that happening? For me it was difficult because there weren’t case studies behind my surgery. They weren’t sure if they put my foot in a better position they weren’t sure whether it would go back.
  • Ask what happens if you don’t do the surgery, what will you lose?

I left it until I felt like I really need it, like the pain and positioning of my feet were such that it was impacting on what I could do. I was thinking about my future too. My whole walking is better now. Although at the time my level of expectation of what surgery could do for me way unrealistic. I think I thought I’d be walking in stilettoes and no would notice I walked differently. I was more realistic when I was older.

Relationships

Where my confidence struggles the most is in meeting people. Relationships are so much a confidence thing. I think it is harder to meet people. Do I put out the vibes of don’t talk to me because I walk a bit funny?

When you’re in your 20s you already feel a little bit less attractive than everyone else because you walk a bit funny and then there may be other functional issues as well. Who do you talk to about that? So you don’t talk to anyone. I spoke to my mum eventually and a few of my friends.

Very little to do with relationships and sexual health with cerebral palsy is discussed. People need to know that if they are having problems there are things that can be done.